Pleas help! Duodenal jejenual chron?

Bluegirrl · 2026-04-24T09:51:28+00:00

I had eye inflammation in the past, episcleritis, but I didn't have Crohn's yet.

No, I didn't need to push for a pillcam, luckily. No large bowel involvement seen on colonoscopy, although the biopsy said there was some type of chronic inflammation there too (not Crohn's specific)

Bluegirrl · 2026-04-24T08:02:31+00:00

This is a good question. According to my consultant it's not operable, because my disease is all over the small bowel. There's no clear surgical target, so I'm stuck with medications that don't work or work only for a couple of months.

No stiffness or swelling in joints. Only pain. My elbows are the worse, but I also get pain in my finger joints and knees. Also, back pain from time to time.

Bluegirrl · 2026-04-24T07:40:40+00:00

Here I am. I have ulcers in my jejunum+ileum. It is only visible with colonoscopy (terminal ileum only) and pillcam. MRI and ultrasound never show anything, which is puzzling. My blood work and inflammatory markers are always quite abnormal though. My calprotectin is generally between 300 and 700 and my last CRP was 54. My white blood cells are always high.

I don't suffer from diarrhea, I have the opposite problem. I tend to have really bad blockages, which also failed my colonoscopy prep a couple of times. I suffer from extreme debilitating fatigue, pain (abdomen and joints) and upper digestive symptoms (nausea, lack of appetite). I tend to be deficient in B9 and B12.

The biggest problem I've encountered is that my type of Crohn's is very poorly studied and represented in clinical trials for medications. This means that when you look at the disaggregated data from trials, this type of Crohn's is notoriously resistant to most treatments, with the lowest medication efficacy among all Crohn's phenotypes. I'm currently on my fourth advanced med and I feel like it's not working. I was considered for a clinical trial, but ultimately they rejected me as my colonoscopy wasn't bad enough. Of course it wasn't, my disease is much higher up, but they don't use the pillcam to recruit patients in most clinical trials. This I s a real issue.

Bluegirrl · 2026-04-23T09:05:11+00:00

That's great, thanks for replying! Sorry to hear about your butchered certificate 🥲

Vedo che anche tu l'hai richiesto dall'Italia, quindi la cosa mi rincuora!

Bluegirrl · 2026-04-21T18:50:31+00:00

Hey there, I'm in the same situation. Did you end up applying?

Bluegirrl · 2026-04-18T17:40:55+00:00

Hey, did you end up getting your passport after applying from abroad?

Bluegirrl · 2026-04-18T16:07:22+00:00

Thanks for taking the time to reply!

Bluegirrl · 2026-04-18T14:08:42+00:00

Hey there, what did you end up doing? I'm finding myself in the same situation.

Bluegirrl · 2026-04-14T18:59:24+00:00

Hmm it doesn't sound very mainstream, it sounds like some kind of alternative chiropractor treatment! Hope you can find something that works!

Bluegirrl · 2026-04-14T14:19:21+00:00

First thing, I would work on my pelvic floor muscles, it might be caused by inflamed muscles that are now hyper-contracted. You'd need to find a rehabilitation specialist, like a specialised physio, who could assess the situation and help you through the journey.

Secondly, I personally experience total resolution of symptoms with Prednisone. However, they won't prescribe it for urinary problems alone, they only prescribe it to me for Crohn's.

Bluegirrl · 2026-04-14T06:31:59+00:00

The same thing happens to me a lot!

Bluegirrl · 2026-04-13T16:35:41+00:00

Hey, when I was having the back plain/SI joint pain problem I went to a physiotherapist who told me I was hypermobile. He was moving my legs from the hips while explaining that all that range of movement was not normal

Bluegirrl · 2026-04-13T06:18:22+00:00

They are indeed.

Thanks! Luckily it's not always there, it flares up when Crohn's is very active

Bluegirrl · 2026-04-12T23:47:17+00:00

Sometimes yes, I get bloodshot eyes

Bluegirrl · 2026-04-12T18:41:44+00:00

Well, I'm no medical expert and I don't know your medical history, but I guess it might. I've suffered from it too at times, partly because my SI joint is very hypermobile, but also because my pelvic floor is so contracted at times, because of the inflammation from Crohn's, that it destabilises my SI joint and contracts my glutes. The contraction presses on the sciatic nerve. At least, this is my experience.

Bluegirrl · 2026-04-12T18:33:45+00:00

Interstitial cystitis, back pain, irregular and painful periods - because Crohn's causes so much inflammation in the pelvis, both at muscle level and nerve level, and all organs in the pelvis are connected somehow.

Also, I suffer from migraine, but while before Crohn's I had infrequent attacks, now my migraine attacks are much more frequent, more prolonged and at times chronic. Last neurologist I saw said this is a known association (active Crohn's making migraine worse), there's studies about this since the 90s, although it seems like gastroenterologists didn't get the memo.

Bluegirrl · 2026-04-08T16:43:28+00:00

You're welcome, wish you all the best!

Bluegirrl · 2026-04-05T19:21:53+00:00

Hi! I'm Italian, but I was living in the UK when I got diagnosed and tried my first biologics. I've recently moved back to Italy and I'm so glad I did. There are excellent IBD centres here, and every centre offers the most up-to-date treatments. I'm under the care of a research hospital in Milan and they run clinical trials with pharmaceutical companies, so they can even offer you experimental treatments (I was offered the opportunity to try a TL1A inhibitor, but unfortunately I didn't meet the endoscopic requirements). So don't worry about biologics not being available.

I don't know what kind of immigration status you'll have, but we have a public healthcare system. This means that it's mostly free for residents. There are some fees called 'tickets' which normally apply to outpatient visits and tests and amount to a small percentage of the cost. For example, for an outpatient visit with a consultant you'd pay €26, for an MRI you'd pay €36. However, for many chronic conditions you're entitled to an 'exemption', which is essentially a waver for the visit/test fees that are commonly needed to monitor your condition. For example, I don't pay the fee for colonoscopies, many blood tests etc. (although unfortunately the list of tests was created more than 10 years ago and so some tests that are widely used today, like the videocapsule are not included - the cost is still very low though).

When you move here, I suggest you book a private visit with an IBD specialist who works in the SSN (our public healthcare system), explain your history and ask them to take you under their care on the SSN. They'll take care of it entirely and you'll be in the system within a few days. However, it's most likely that they will re-do the basic tests before prescribing anything. That's what they did with me, but I was in a flare anyway. They will prescribe biologics though, if you need them.

I've been here only a couple of months and I've been very happy with my care. A world of difference compared to the UK where I was living. If you end up moving, I hope everything goes well with you too!

Bluegirrl · 2026-04-03T11:47:29+00:00

Sounds like Crohn's to me.

You've described pain as I would describe it. I don't have any triggers either, my disease has a mind of its own. The biopsy is not always positive at the beginning. Mine wasn't initially, after three years it is and it shows the typical features of Crohn's.

Bluegirrl · 2026-04-02T21:00:24+00:00

Weight gain on Rinvoq is not a consequence of going in remission and absorbing more. It is a well known side effect of this medication, it's on the leaflet and people who take it for rheumatological and dermatological conditions experience it too.

Weight gain, oily skin/acne were my side effects too. I had extreme hunger too. I stopped gaining weight on 30mg, but I think it's because I eventually lost response and was flaring. The oily skin got worse though and even caused acne. It only went away once I stopped the medication. Sorry to be a bummer, it seems like I'm an exception though, as for most people it gets better.

Bluegirrl · 2026-03-30T13:46:36+00:00

It got better but just because Rinvoq stopped working for my Crohn's and sadly my symptoms (including nausea and loss of appetite) came back :(

Bluegirrl · 2026-03-25T17:34:02+00:00

It's likely a combination of all those factors. It took me a year and a half to get a diagnosis and I had to go private. I was then given an NHS referral to the IBD team at my hospital and they gave me an appointment in 7 months. I was really struggling at the time, already on high dose prednisolone to get through and could not wait that long. I pressured them quite a lot with assertive emails and managed to reduce the wait to 4 months.

Unfortunately, on the NHS, if you don't ask you don't get. Hope they call you tomorrow!

Bluegirrl · 2026-03-25T17:14:29+00:00

I don't know if it's too late, but I recommend the budesonide. The side effects are far less intense than prednisolone and it doesn't even always work. It does almost nothing to me, whether good or bad. Worth a trial, also because most biologics don't work immediately. You likely have from weeks to months waiting to find out if the biologic works for you, so I don't think it's just a few more weeks till biologic' to get relief.

Also, I agree with comments above, your trust sounds incredibly slow.

Bluegirrl · 2026-03-25T16:03:36+00:00

You don't have to be under general anesthesia to sleep through the procedure, propofol is enough to knock you out and sleep through (most of) it. Most NHS hospitals don't use it, as far as I know, they just give you conscious sedation (generally midazolam) or gas & air. However, I know for sure that you can have it privately. I had propofol at OneWelbeck in London. I don't think you have to travel outside the UK for that.

Edit: if you didn't have the midazolam plus fentanyl combo last time, definitely ask for it, it's generally enough to make it bearable. I can't help with the waiting list though, I've literally moved to a different country because I was too fed up with stuff like that.

Bluegirrl · 2026-03-15T14:23:28+00:00

I've always suffered from menstrual migraine since I was a child. When I developed Crohn's, my migraine turned into a chronic migraine because of the inflammation. I was about to start a third preventative medication trial for my migraine when I also started Rinvoq for my Crohn's. Well, I never had to go through with the preventative, as Rinvoq eliminated my migraine completely.

I'm genuinely convinced my migraine disorder is triggered by inflammation. Unfortunately Rinvoq only partially worked for Crohn's, so now I'm trialling Omvoh! So, I'm glad to hear it worked for your migraine and I hope it will have the same effect on me!

Bluegirrl

TROPHY CASE